1. Richard Antonelli, MD Medical Consultant Ceci Shapland, RN, MSN HRTW Family/Youth Consultant Mallory Cyr HRTW Youth Coordinator 7 th Annual Forum for Improving Children’s Healthcare March 20, 2008 Healthy & Ready to Work, to Live and to Participate!

3. Title V Leadership Toni Wall, MPA Kathy Blomquist, RN, PhD Theresa Glore, MS Federal Policy Patti Hackett, MEd Tom Gloss Interagency Partnerships Debbie Gilmer, MEd Medical Home & Transition Richard Antonelli, MD, MS, FAAP Patience H. White, MD, MA, FAAP Betty Presler, ARNP, PhD Family, Youth & Cultural Competence Mallory Cyr Ceci Shapland, MSN Trish Thomas HRSA/MCHB Project Officer Elizabeth McGuire HRTW TEAM

4. www.hrtw.org

5. Disclosure Neither Dr. Antonelli, Ms. Cyr, nor Ms. Shapland, nor any members of our immediate families have a financial relationship or interest with any proprietary entity producing health care goods or services related to the content of this CME activity. Our content will not include discussion/ reference of any commercial products or services. We do not intend to discuss an unapproved/ investigative use of commercial products/devices.

6. Objectives List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare Define the role of physicians, families, youth and other care providers/coordinators in the transition of youth from pediatric to adult medical care. Define appropriate use of transition tools from the HRTW website and other national resources.

7. Health Impacts All Aspects of Life Success in the classroom, within the community, and on the job requires that young people are healthy. To stay healthy, young people need an understanding of their health and to participate in their health care decisions.

8. What is Health Care Transition? Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals. Components of successful transition Self-Determination Person Centered Planning Prep for Adult health care Work /Independence Inclusion in community life Start Early

9. Objectives List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare Define the role of physicians, families, youth and other care providers/coordinators in the transition of youth from pediatric to adult medical care. Define appropriate use of transition tools from the HRTW website and other national resources.

10. Think About Who is caring for youth with SHCN between ages 15-25? What do you think YOUTH want to know about their health care/status? At what age should children/youth start asking their own questions to their Doctor? At what age does your practice encourage assent signatures?

11. Outcome Realities Nearly 40% cannot identify a primary care physician 20% consider their pediatric specialist to be their ‘regular’ physician Primary health concerns that are not being met Fewer work opportunities, lower high school graduation rates and high drop out from college YSHCN are 3 X more likely to live on income < $15,000 CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002

12. Survey ComponentsPercentages Percent of transitioned patients< 2% in 95% of practices Transitioned pats. came with an introduction75% Transitioned patients know their meds45% Transitioned patients know their disease30% Transitioned patients ask questions20% Parents of transitioned patients ask questions69% Transitioned Adults believed they had a difficult transition40% Maria Ferris, MD, PhD, MPH, UNC Kidney Center Internal Medicine Nephrologists (n=35)

13. IOM Quality Measures The Health care system should be: Safe Effective Patient centered Timely Efficient Equitable SOURCE: Crossing the Quality Chasm 2001

14. Health Care Processes Should Have: Care based on continuing healing relationships Customization based on patient needs and values Patient as source of control Shared knowledge and free flow of information Safety Transparency Anticipation of needs SOURCE: Crossing the Quality Chasm 2001

15. How Do We Achieve That Type of System?

16. National Center of Medical Home Initiatives Care that is: – Accessible – Family-centered – Comprehensive – Continuous – Coordinated – Compassionate – Culturally-effective Elements of Medical Home and for which the primary care provider shares responsibility with the family.

17. What is Medical Home Really? A Medical Home is a community-based, primary care setting that integrates high quality, evidence-based standards in providing and coordinating family-centered health promotion as well as acute and chronic condition management.

18. What is Medical Home Really? A sub-specialist can provide a Medical Home as long as all elements of the care needs of the patient are addressed.

19. Functional and Clinical Outcomes Resources and Policies Community Care Model for Child Health in a Medical Home Adapted from Wagner, et al Health System Health Care Organization (Medical Home) Delivery System Design Decision Support Clinical Information Systems Care Partnership Support Informed, Activated Patient/Family Prepared, Proactive Practice Team Family - centered Coordinated and Equitable Timely & efficient Evidence-based & safe Supportive, Integrated Community Prepared, Proactive Practice Team

20. ProviderParentYoung Person Major responsibilityProvides careReceives care Support to parent and child ManagesParticipates ConsultantSupervisorManager ResourceConsultantSupervisor Shared Decision Making

21. Prepare for the Realities of Health Care Services Difference in System Practices Pediatric Services: Family Driven Adult Services: Consumer Driven The youth and family finds themselves between two medical world …..that often do not communicate….

22. PediatricAdult Age-related Growth& development, future focussed Maintenance/decline: Optimize the present FocusFamilyIndividual Approach Paternalistic Proactive Collaborative, Reactive Shared decision-makingWith parentWith patient ServicesEntitlementQualify/eligibility Non-adherence>Assistance> tolerance Procedural PainLower threshold of active input Higher threshold for active input Tolerance of immaturityHigherLower Coordination with federal systems Greater interface with education Greater interface with employment Care provisionInterdisciplinaryMultidisciplinary # of patientsFewerGreater

23. Think About Are you familiar with the ACP?AAP/AAFP/Consensus Statement? How do you teach children and youth about their wellness baseline? What 3 essential skills you can teach in the office encounter?

24. A consensus statement on health care transitions for young adults with special health care needs American Academy of Pediatrics American Academy of Family Physicians American College of Physicians - American Society of Internal Medicine Pediatrics 2002:110 (suppl) 1304-1306

25. Survey of Pediatric Practices on Transition Policies for YSHCN A pilot survey based on the policy recommendations of the consensus statement transition statement was completed in 2005 by 100% of 21 practices (146 physicians and 36 nurse practitioners) in Central Pennsylvania. The practices had volunteered to participate in developing a comprehensive family centered model of care.

26. Results of Pediatric Practice Survey 38% had a stated policy in their practice for when a YSHCN should transfer to an adult physician 0% had policy posted for families to see 66% had identified adult practices for referral. 19% had a policy to discuss legal issues for adulthood before age 18. 33% had identified a transition coordinator in the office 29% had care plans for YSHCN supporting transition process Source: White PAS 2006

27. Results of Pediatric Practice Survey 4% (one practice) used an individualized medical transition plan 29% had a plan - transportable medical record 62% rated their practice as not having a transition process but were interested in developing one 52% wanted assistance in developing forms/procedures 71% wanted assistance in coding for transition. Source: White PAS 2006

28. 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 1.Identify primary care provider Peds to adult Specialty providers Other providers Pediatrics 2002:110 (suppl) 1304-1306

29. 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 2. Identify core knowledge and skills Encounter checklists Outcome lists Teaching tools

30. Core Knowledge & Skills: POLICY Identified staff person coordinates transition activities Office forms are developed to support transition processes CPT coding is used to maximize reimbursement for transition services Legal health care decision making is discussed prior to youth turning 18 Prior to age 18, youth sign assent forms for treatments, whenever possible Written transition policy states expected age youth should no longer see a pediatric HCP and /or when youth expected to see HCP alone

31. Core Knowledge & Skills: MEDICAL HOME Practice provides care coordination for youth with complex conditions Practice creates an individualized health transition plan before age 14 Practice refers youth to specific primary care physicians Practice provides support and confers with adult providers post transfer Practice actively recruits adult primary care /specialty providers for referral

32. Core Knowledge & Skills: FAMILY & YOUTH Practice discusses transition after diagnosis, and planning with families/youth begins early (ped practice) or when youth are transferred to the practice (adult practice) Practice provides educational packet or handouts on expectations and information about transition Youth participate in shared care management and self care (call for appt/ Rx refills) Practice assists families/youth to develop an emergency plan (health crisis and weather or other environmental disasters)

33. Core Knowledge & Skills: FAMILY & YOUTH Practice assists with planning for school and/or work accommodations Practice assists with medical documentation for program eligibility (SSI, VR, College) Practice refers family/youth to resources that support skill-building: mentoring, camps, recreation, activities of daily living, volunteer/ paid work experiences Practice invites youth to be QI partner

34. Post-secondary: Medical Issues Selection of school: Career training with support services and scholarships. Medical supports needed at school, nearby campus, and plans for emergency and inpatient events. Insurance Coverage (is it adequate and is it one plan or a patch of plans) Modifications: Work Load, Medical Care, and Proactive Wellness Visit the DSS at the start of school

35. 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 3. Maintain an up-to-date medical summary that is portable and accessible Knowledge of condition, prioritize health issues Communication / learning / culture Medications and equipment Provider contact information Emergency planning Insurance information, health surrogate Pediatrics 2002:110 (suppl) 1304-1306

36. 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 4. Create a written health care transition plan by age 14: what services, who provides, how financed Expecting, anticipating and planning Experiences and exposures Skills: practice, practice, practice Collaboration with schools (add health skills to IEP) and community resources Pediatrics 2002:110 (suppl) 1304-1306

37. Collaboration with Community Partners Special Education Co-ops Higher Education Vocational Rehabilitation/ Workforce Development Centers for Independent Living Housing, Transportation, Personal Assistance, and Recreation Mental health Grant projects in your state

38. 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 5. Apply preventive screening guidelines Stay healthy Prevent secondary disabilities Catch problems early Pediatrics 2002:110 (suppl) 1304-1306

39. Core Knowledge & Skills: SCREENING Exams include routine screening for risk taking and prevention of secondary disabilities Practice teaches youth lifelong preventive care, how to identify health baseline and report problems early; youth know wellness routines, diet/exercise, etc.

40. Screen for All Health Needs Nutrition (Stamina) Exercise Sexuality Issues Mental Health Routine (Immunizations, Blood-work, Vision, etc.) Secondary Conditions/Disabilities Accelerated Aging issues

41. 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 6. Ensure affordable, continuous health insurance coverage Payment for services Learn responsible use of resources Pediatrics 2002:110 (suppl) 1304-1306

42. Core Knowledge & Skills: HEALTH CARE INSURANCE Practice is knowledgeable about state mandated and other insurance benefits for youth after age 18 Practice provides medical documentation when needed to maintain benefits

43. Transition & ……Insurance NO HEALTH INSURANCE 40% college graduates (first year after grad) 1/2 of HS grads who don’t go to college 40% age 19–29, uninsured during the year 2x rate for adults ages 30-64 SOURCE: Commonwealth Fund 2003

44. Extended Coverage – Family Plan Adult Disabled Dependent Care Incapable of self-sustaining employment by reason of mental or physical handicap, as certified by the child's physician on a form provided by the insurer, hospital or medical service corporation or health care center Adult, childless continued on Family Plan Increasing age limit to 25-30 CO, CT, DE, ID, IN, IL, ME, MD, MA, MI, MT, NH, NJ, NM, OR, PA, RI, SD, TX, VT, VA, WA, WV

45. Transition to Adulthood

46. Objectives List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare Define the role of physicians, families, youth and other care providers/coordinators in the transition of youth from pediatric to adult medical care. Define appropriate use of transition tools from the HRTW website and other national resources.

47. Youth With Disabilities: Stated Needs for Success in Adulthood PRIORITIES: Career development (develop skills for a job and how to find out about jobs they would enjoy) Independent living skills Finding quality medical care (paying for it; USA) Legal rights Protect themselves from crime (USA) Obtain financing for school (USA) SOURCE: Point of Departure, a PACER Center publication Fall, 1996

48. Youth With Disabilities: Stated Needs for Success in Adulthood Main concerns for health: What to do in an emergency, Learning to stay healthy* How to get health insurance*, What could happen if condition gets worse. SOURCE: Joint survey - Minnesota Title V CSHCN Program and the PACER Center, 1995 *SOURCE: National Youth Leadership Network Survey-2001

49. Factors Associated With Resilience for Youth With Disabilities: Which is most important? Self-perception as not “handicapped” Involvement with household chores Having a network of friends Having non-disabled and disabled friends Family and peer support Parental support w/out over protectiveness Source: Weiner, 1992

50. Health & Wellness: Being Informed “The physician’s prime responsibility is the medical management of the young person’s disease, but the outcome of this medical intervention is irrelevant unless the young person acquires the required skills to manage the disease and his/her life.” SOURCE: Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374

51. EXPECTATIONS: What do you want to do when you are older? Next year? Five years? TEACH: What can you tell me about your medical issues? Do they affect you from doing what you want? OPINION: What do you think of the…? Be open and honest.. listen and be “askable”… Involve in decision making (assent to consent, give them a sense of competence)

52. Levels of Support Family RoleYoung Person IndependentCoach Can do or can direct others Interdependent Consultant Coordinates Can do or can direct others May need support in some areas DependentManages Coordinates expand circle of support Needs support full-time -all areas expand circle of support

53. ASSENT to CONSENT Eastern Maine Medical Center A parent or guardian is generally required to sign for a patient under the age of 18. Patients aged 14-17 should also sign. See IDD 20.041. If an adult is unable to make or communicate medical decisions, then the following may sign in the priority given: agent under healthcare power of attorney, guardian, spouse, domestic partner, next-of-kin. See IDD 20.060 Indicate capacity of representative.

54. Handout: Portable Medical Summary Carry in your wallet Good Days Cheat Sheet: Use as a reference tool Accurate medical history Correct contact #s Document disability Health Crisis Expedite EMS transport & ER/ED care Paper talks when you can not

56. Preparing for the 15 minute Doctor Visit Know Your Health & Wellness Baseline How does your body feel on a good day? Prepare questions at each visit Give brief health status & overview of needs. Know emergency plan when health changes. What is your typical body temperature? Respiration, heart rate and blood pressure.

57. Do you have “ICE” in your cell phone contact list? To Program: Create new contact Space or Underscore __ (this bumps listing to the top) Type “ICE – 01” ADD Name of Person include all ph #s Note your allergies You can have up to 3 ICE contacts (per EMS)

58. Skills for Children & Youth What to do By Age 10 Before Age 18

59. CHORES: Are you doing chores? ATTENDANCE: How are you doing in school? PLANNING: How are you doing with your plan? PARTICIPATION: What do you do when you are not in school? CAREER: What kind of work do you want? STAY WELL: Are you taking care of your health?

60. Skills Before 10Before 18 Carry and present insurance card X Know wellness baseline, Dx, Meds XX Make own Doctor appts X Call in Rx X Learning Choice X Decision making (assent to consent) X Prepare for Doc visit: 5 Qs XX Present Co-pay XX Assess: Insurance, SSI, VR X Gather disability documentation X

61. Transition & ……Family

62. Prepare for Changing Roles: Families & Youth Temporary spokesperson on behalf of minor child Until age 18, or declared by the court 2 voices to be heard: families and CY Opportunities: TRY, fail, relearn, try again Attain Skills = Practice

63. Survey of Family to Family Health Information Centers Key Points Identified fragmentation of system-100% Biggest need: linkages to community resources Resource for healthcare facilities and providers

64. Changing Roles Checklist-tool Assess skills Identify supports Guardianship/Conservatorship

65. Transition and the Youth with Development Disabilities Level of participation Supports Health advocate

66. Bottom Line With or without us - youth and families get older and will move on…Think what can make it easier; do what’s in your control and support youth to tackle what’s their control. Start early!!!!! Reinforce life span skills - Prepare for the marathon Assist youth to learn how to extend wellness, practice skills and learn Reality check: Have all of us done the prep work for the send off before the hand off?

67. Transition is complete when: Youth has health care that is paid for Care that is developmentally appropriate Able to self manage or support is identified Able to make health care decisions or support is in place Youth Leaders are partners in policy review and development

68. Effects of a well planned transition: Improved disease control Vocational readiness Quality life

69. What would you do, if you thought you could not fail?

70. Resources HEALTHY & READY TO WORK www.hrtw.org HRTW Portable Medical Summary - One page summary of health needs that youth or others can carry. Information contains medical history, current medication, name of health surrogate, health insurance numbers, contact information for treating doctors, pharmacy, home health and other vendors. Understanding Health Insurance - Web links to Choosing a Plan, Paying for Care, Public Insurance, Private Insurance, Policy / Advocacy Centers and Insurance Regulations, Laws and Statutes. Decisions & Making Choices - Web section contains information of Informed Decision Making, Assent-Consent, Guardianship, Living Wills and Advance Directives.

71. Resources HRTW Portal - Laws that Affect CYSHCN http://www.hrtw.org/tools/laws_leg.html The Term Special Health Care Needs or Disability Disability Rights Portals Education Issues Employment & Disability Equal Opportunity Access (504, 508 & ADA) Family Medical Leave Act HRSA/MCHB – Title V Legislation Health Insurance Benefits SSI/SSDI

72. ADOLESCENT HEALTH TRANSITION PROJECT Washington http://depts.washington.edu/healthtr/index.html Transition Timeline for Children and Adolescents with Special Health Care Needs. Transitions involve changes: adding new expectations, responsibilities, or resources, and letting go of others. The Timeline for Children may help you think about the future. Working Together for Successful Transition: Washington State Adolescent Transition Resource Notebook - Great example to replicate. Adolescent Autonomy Checklists Resources

73. HEALTH AND HEALTHCARE IN SCHOOLS http://www.healthinschools.org/ejournal/2003/privacy.htm The Impact of FERPA and HIPAA on Privacy Protections for Health Information at School. Sampling of the questions from school nurses and teachers. NICHCY - National Dissemination Center for Children with Disabilities www.nichcy.org Materials for families and providers on: IDEA, Related Services and education issues – in English/Spanish Section 504 http://www.ed.gov/about/offices/list/ocr/504faq.html

74. GOT DATA! www.cshcndata.org

79. http://www.championsinc.org